What Many People Don't Know About My Charcot-Marie-Tooth Disease

Do I want to go hiking with you? Yes, but the bigger question is, can I do it? That is always the question I have to ask, as well as: will it be steep? Is it narrow? Is it rocky? You see, these things scare me and make it even more difficult for me to attempt to hike. I truly want to, but I probably cannot go with you.

I know, looking at me you may not even realize I have a disability. Then I get up and walk. That is when you see the awkward unbalanced gait, slight limp and drop foot. You may even want to ask, but you don’t. You may feel sorry for me; please don’t. You may want to help; I am getting better at accepting that. You may wonder what happened to cause me to have such a funny gait. Nothing happened; I was born this way.

Growing up with Charcot Marie Tooth disease (CMT), my parents never let it hold us back. My brother and sister played in Little League and my sister and I were in dance until we each had back surgery. In 1986, I had scoliosis surgery. I have a stainless steel rod from the base of my neck to the base of my spine. Yes, it is connected with a nut and bolt mechanism. No, it does not hurt. I can not really bend from the waist or arch my back. I do not really miss doing that, though. There are certain things that are more difficult, but my parents taught us to do the best we can and that it does not matter if we are disabled.

Thankfully, I have friends who understand my limitations due to CMT and back issues. They know it’s not that I do not want to go to the ball game, it is just the thought of those steep scary steps. They understand that I need to use my cane when walking great distances and/or on uneven surfaces. They understand that I can not lift or move that heavy box.

What they don’t understand is how it makes me feel. They do not know because I do not tell them. I do not tell them it makes me feel helpless when I cannot walk up the steep staircase without assistance, or get into the pool with no railing or hand to hold. They do not know how jealous I am that they can just jog up or down a flight of stairs without a railing while I am standing there trying to figure out how to navigate those steps. They don’t know it saddens me that I cannot run and play with my son. (He understands, but it still makes me sad.)

I am jealous that my friends can go into a store and just buy a pair or two of shoes. I cannot even think about doing that. Instead I need to go to a special store and try on endless pairs of shoes. If I am lucky, I find a pair that is sort of comfortable and maybe under $150. I am jealous of people who can wear cute shoes and flip flops — silly, I know, but it bothers me. I cannot even really wear sandals anymore and that makes me sad; I love sandals in summer. I am coming to terms with comfort and support over fashion. It is not easy, but I am working on it. If I am being honest, I hate my feet, curled toes, high arch and bum ankle. My feet are icky — thanks CMT! Yes, I love your cute pedicure but it makes me mad that I cannot really get one or show it off. You see, I am embarrassed about my feet and am not comfortable showing them to others. I know my friends won’t care, but I do.

My friends may not know how much CMT impacts my life because I do not think they need to know. They are supportive and helpful and know when I cannot do something, I truly cannot. You see, I do not use my disability as excuse. I never say I cannot do that because I am disabled. Instead, I do it to the best of my ability. I do it with limitations. So instead of taking the 3 mile hiking path, I opt for the 1 mile path. Instead of going nonstop all day, I build in breaks and rest time I know I will need. If I am doing something more tiring on Saturday, then Sunday is a rest day. I have learned I need that rest time to recover and heal my body. I am learning to listen to my body — not always the easiest thing to do.

So, when you ask if I want to go somewhere and I hesitate, please know it is not that I do not want to go. It is just that I need to weigh the pros and cons of the suggested activity. I do not want to hold you up or slow you down. I know in my heart that my friends probably won’t mind, but convincing my brain of that is not always easy. I ask for your understanding and support as I navigate the progression of CMT. I ask for your patience as I navigate the unknown aspects of this disorder. Most of all, I hope you know how much I treasure your love and support.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Mike Watson.